My Crohn's Disease

Hey everyone. My name is Shawn, and I live in Los Angeles, CA. I'm 17 years old. I was diagnosed with Crohn's about 1.5 years ago or so but I'm pretty sure I've had the disease much longer than that. When I was young (5-6 and on), I used to LOVE drinking Milk... and I mean like Milk was my substitute for water; everyday I drank an average of 2 glasses. Of course, if you drank as much milk as I did, you'd eventually end up with constipation problems which I suffered. I used to be constipated all the time (before I got crohn's) when I was a little kid until around the time I got Crohn's (oddly enough). I would go #2 like every 3-4 days or so, as it became normal and I never knew other people went everyday or even two times a day. I got used to this, and I never let my Mom know because I didn't think much of it or think it was a big deal. As drinking a lot of milk and rarely going to the bathroom became the norm of my childhood, it seems this eventually lead to Crohn's. I'm pretty confident that this was the cause of crohn's, but I keep reading everywhere that diet / stress has nothing to do with the cause so I can't determine the validity in my case:thumbdown:. When I was around 14-15, my Mom got Breast Cancer, and that was definetely a horrible time for her and it had an impact on the whole family. Your mom who used to have nice long hair now wearing a wig definetely makes you feel weird. She got kemotherapy etc etc and she eventually healed. This may have had an impact on me causing me to feel depressed (which, in conjuction with the constipation caused crohn's?) but I was more in denial during that time (i could never believe any 1 of my family members would get cancer, let alone my own mother). Anyways, fastforwarding to when I was diagnosed, I did the standard tests/procedures everyone else with the disease did: Colonoscopy with that fun laxative days before the procedure:lol:, drinking barium sulfide, blood tests to check for anemia, etc. When I realized I had Crohn's I kind of just shrugged it off. It seems that my type of Crohn's is very mild compared to everyone else's situations which I've read. I was in denial at this point as well because I never believed I would be in a situation like this in my life. So much for my elitist attitude lol.

Backtracking a little...Before I was diagnosed, around 15, in my ap chem class i had the WORST feeling in the world. Like someone was trying to rip open my stomach and was succeeding . As I sat in my seat, I couldn't move my stomach or flex my abs to endure the pain or it would get worse. The only thing that could be good in that situation was just not to move or react in any way. It passed realistically around 30secs-1minute or so but it felt like at least 30 minutes of pain. I went straight to the bathroom, and went #1. As I was going, my stomach was extremely hurting. It's only happened once ever, so I'm hoping that doesn't come back again. I didn't talk to my doctor about it or anyone but I'm assuming it was a kidney stone...if anyone can confirm. Anyways, I developed anal fissures (from the constipation I had normally) and eventually a fistula which goes straight from somewhere in my intestines to a little off the side of where my anus is. Fistulas are freaking annoying. The leaks are the most annoying thing in the world which i don't want to go into detail to but if anyone else knows what i mean LET ME KNOW!!!!!!!!!!!!(SORRY IF I'M GROSSING ANYONE OUT!).

My doctor gave me Asacol (i dont remember the amount of mg), and after it seemed to have no effect, Pentasa, which seemed to stop the the flares and helped me go #2 easier. The most interesting thing about my story however, is that after only like 2 weeks of taking Pentasa, I stopped taking it without order of my doctor just because I was lazy and through my instincts felt like I didnt need it. This was all 1.4 years ago around the time I was diagnosed. I haven't taken a medication to this day. Ever since that time, I go #2 more than usual (starting to be every 1-2 days). I made a record last week by going every day for 7 days which I dont think I've ever done in my life. The biggest thing I could say that has helped me out with this disease is COMPLETE LIFESTYLE CHANGE. I can't stress that enough. Before I used to sleep late and wake up early all the time because I was addicted to the computer and had to go to school every morning. This of course weakens your body as you're just not letting it repair itself. By no means am I cured at all. Every second of everyday I can "feel" a presence on where my ileum is as much as I can feel anything with my fingers. I'm just always aware of something there and it feels different than the rest of my stomach (or technically intestines i guess). Please tell me if you guys feel this too. The best decision I made during the beginning stages of my diagnosis was to get many different opinions from different doctors. The one that originally discovered my disease suggested 6-MP right away. If I didn't get a second opinion which my mom had advised I would have been in a situation I didn't need to be in. The only reason I've gone so long without my ordered medication is because I've been able to keep my Crohn's in a somewhat reccessive state. I used to always get "outbreaks" of crohn's which hurt like mofos which I've learned to deal with and live with, but when you are in that situation my best advice is to see why you may have had that outbreak: what did you eat yesterday, what did you eat a couple hours ago, did you sleep well the night before, are you pressured, are you nervous, are you thinking of something that is causing you to feel sad. are you tired. When you start to think happy thoughts and laugh for no reason during an outbreak it seems to magically decrease in pain FAST (even though u are in excruciating pain FIGHT IT WITH HAPPINESS!!!looool). Its worked for me, try it. Has anyone else started to have a "pain immunity" or gotten used to the pain where you start to passively ignore it? Please tell me if any of what I told you about my story may help you. At this point I'm just living like any other person and watching what I eat and trying to go to the bathroom and pretending to be a happy person. I'm beginning to believe the placebo effect can work to a small extent but nevertheless help. Through this complete overhaul of lifestyle I haven't had a flare in 6 months at least

Welcome to our community. Yes, pain immunity comes to most people with chronic conditions. You just endure more and more and just get used to it. Hang in there, keep doing what works for you, and we all are here to vent to, ask questions of, or chat with. Welcome!

Hi Dekar,

Welcome and thanks for sharing your story with us. Its really uncanny how areas of your story are so similar to mine. I have had crohns since I was about 19, I'm now 32. I too was put on Asacol first which did absolutely nothing so I was then put on Pentasa which I still take to this day. I also had to laugh at your fistula comments. I've had surgery in June this year to remove my illeum as it had become stuck to my rectum causeing numerous fistulas. I too had perianal fistulas and know exactly what you mean when you talk about the stuff they secrete, and yes I totally agree, they are gross and mine were very very painful because I had so many of them. I'm still waiting for them to heal and then hopefully I can have reversal surgery to take away my stoma. At the time I fisrt started with my symptoms (I was about 18/19) and at that time my mum also had cancer, except hers was cervical and womb cancer. I t was a terrible time for us all, thankfully she's been given the all clear, its nice to hear your mums also ok. Anyway I hope you continue to do ok and if you want any help or advice feel free to ask.


Ruth

I agree with you on not starting off so soon with 6-mp, But, a lot of GI's are starting out more aggressive if they suspect Crohns Disease, you dont want to turn out like me, and only at 21.

Asacol, releases in your terminal illieum and colon, terminal illieum is at the end of your small bowel, connected to your colon, So if pentasa helped and asacol didnt, then its because you have Crohns illieitis, which menas in your small bowel.

Pentasa releases itself in the small bowel and NOT the colon, which is why pentasa would have worked with you instead of asacol, getting released in different areas.

Check out my story its called 'My story' I believe, I'll bump it back to the top of the page. I might sticky it until you read it.

Hi Shawn,

Welcome to the community! I am sorry that you and your family had to go through such difficulty, but hopefully the future is bright for all of you.

I do not know what the pain was that day in class, but kidney stones are common for people with Inflammatory Bowel Disease. I think calcium buildup can also cause the stones.

Anyways I enjoyed reading your story and hope to see you around the forum.

Hey Dekar, thats almost the same story as I had except I was diagnosed at fourteen and I took flagyl, prednisone, and 6-mp which I still take. I am seventeen now and am in my senior year, if you ever want to chat pm me. I hope you feel better soon.

Ahh yes I forgot to mention the kdiney stones. Nine in the past 11 months, and before that none, even though I've had Crohns for 4 years now.

Oh sorry Dekar I forgot to welcome you to the forum. So, welcome to the forum.

Skinsfan1229 said:

I agree with you on not starting off so soon with 6-mp, But, a lot of GI's are starting out more aggressive if they suspect Crohns Disease, you dont want to turn out like me, and only at 21.

Asacol, releases in your terminal illieum and colon, terminal illieum is at the end of your small bowel, connected to your colon, So if pentasa helped and asacol didnt, then its because you have Crohns illieitis, which menas in your small bowel.

Pentasa releases itself in the small bowel and NOT the colon, which is why pentasa would have worked with you instead of asacol, getting released in different areas.

Check out my story its called 'My story' I believe, I'll bump it back to the top of the page. I might sticky it until you read it.

Click to expand...

You mentioned that if Asocol didn't work then its because you have crohns illeitis. I have to disagree, I have crohns in my small bowel and my large bowel, true the worst area was my illeum but it is still in my large bowel also. Even though this is the case, I have happily taken Pentasa for 5 years knowing that its for the small bowel but it does reduce my symptoms and reduce my discomfort. Anyway after reading your post I am now left a little confused. As you've probably read, I've just had my terminal illeum and part of my colon removed. I thought I would be symptom free almost as the most diseased part has been removed. But, this is not the case, I am still having discomfort from my crohns, its not excessive but I now wonder if its the areas in my colon that are causing this as the pentasa won't really be doing anything for that part. Must get that checked out.


Ruth

oh no I'm sorry If i said that, but it DOES get released in your terminal illieum and colon....not the dudoneum, or jejunem though.

I was right about where it releases just didnt mean to say Crohns Illieitis, its just Crohns.

Aloha Shawn and welcome to the forum. I hope you'll be back often!